The National Health Service (NHS) is set to launch a new advanced test for Down’s syndrome this year in England and Wales.
Non-invasive prenatal testing (NIPT) is a safer form of screening that involves a blood test and has no risk of miscarriage, unlike the most common current invasive procedure.
Each year, the NHS will offer NIPT to around 10,000 women considered to be at “high-risk” of giving birth to a baby with Down’s, Edwards’ or Patau’s syndrome. Although the Church of England has welcomed the advances in screening technology, Church officials have warned that the new test could lead to a higher number of pregnancy terminations.
Officials have voiced their concerns in a new report called Valuing People with Down’s Syndrome. The report, released by the Church’s ruling General Synod earlier this month, cautions that the way NIPT “is introduced, understood and administered has the potential to lead to major reductions of Down’s syndrome live births.”
The report cites the cases of Iceland and Denmark, two countries with nearly universal screening. In both countries, close to 100% of women who receive a positive test for Down’s syndrome choose to terminate the pregnancy. The Church has warned that this could cause people with the condition to “effectively disappear from their populations.”
Each year in England and Wales, there are around 750 babies born with Down’s syndrome. In total, about 40,000 people in the UK have Down’s syndrome, or 0.06% of the population. Life expectancy for people with Down’s syndrome has increased dramatically over the past century – it is currently around 60, compared with nine in 1929, and 25 in 1970. The Church noted that individuals with the condition also now experience greater quality of life and social inclusion.
While total numbers of abortions in the UK are decreasing, abortions of fetuses with Down’s syndrome are on the rise, according to Brendan McCarthy, the Church of England’s adviser on medical ethics. In 2016, 706 pregnancies with a fetus with Down’s syndrome were terminated, up from 482 pregnancies in 2010. Currently, around 90% of women in England and Wales who receive positive diagnoses from existing invasive tests choose to terminate their pregnancies.
Because NIPT has the potential to lead to more pregnancy terminations, the Church has called for further debate about the introduction and possible widespread use of the test. Next month, the General Synod will debate a motion calling on government and professional bodies to make sure that “parents who have been told that their unborn child has Down’s syndrome will be given comprehensive, unbiased information.” This means that health professionals must avoid presenting a diagnosis of Down’s syndrome as “bad news,” and avoid initiating a discussion of pregnancy termination.
The Church also emphasized the need for regulation of NIPT. The report raised concerns about commercial firms offering NIPT without the counseling provided by the NHS, including some that are selling the test online.
McCarthy acknowledged that anyone who receives a diagnosis of fetal disability may be “facing very difficult decisions, involving deep thought, turmoil and agony.” He commented, “The C of E is not in the business of telling women what to do,” but rather wants “to make sure that whatever choice is arrived at, it’s a free and fully informed choice.”